She Runs A Good Race

mothering is a marathon

The Burn

UnknownI’m going to burn up this year. 

My favorite Equinox instructor (and my friend), Rebecca, always tells us, when we are dying in her hard-core fitness classes, that the burn means that change is happening in our bodies.  We want that burn.  We need that burn.  Even if we are screaming and whining like little girls on the inside.

She always reminds us we can do it and to just push through the burn and DO. NOT. GIVE. UP.  Embrace it, when what you really want to do is stop, quit, and take a sip of water.

Every time Rebecca says this, it speaks a life-metaphor to my soul.

Right now we are in a particularly challenging new phase with Ryan.  Symptoms of PWS are popping up in intensity, frequency, and severity.  And may I just say for the record that Prader-Willi syndrome is from the pit of hell!  I will stop there, before I begin to rant and rave.

In this new season of high anxiety for Ryan is high anxiety for us.  All of us.  We “walk on eggshells” as they say so as not to set him off, and then be forced to deal with crying, perseverating, and tantruming.  His food drive, (what makes the syndrome famous or newsworthy) is kicking in and I must be more vigilant and watchful at parties and restaurants, so that he doesn’t overeat.  Overeating in PWS is harmful and life-threatening.  It’s not just like if you or I overeat at a meal and feel uncomfortable, and our stomachs pooch out all prego-style.  (For more information on PWS, please visit the website pwcf.org.)

Throughout the 10 ½ years we have raised Ryan, I have come to describe in different ways how it affects ME personally:

“It comes in waves.  The stress, the pressures, the appointments…there is an ebb and flow.”

“It’s like living with chronic grief, deep below the surface, but always there.”

“I am NOT grateful for having a disabled son, but I AM grateful for how my soul and heart have expanded as a result of our journey.”

And on a completely maddening and exhausting day:

“F— this syndrome and how it tortures my son and the rest of us!!”

It’s January 2014 and I am burning.  My emotions, my thoughts, and my heart are on fire, as we deal with new behaviors or more intense behaviors.

I have a choice.  To just get flipping angry or have pity parties or give up and use some form of escape to numb the pain and stress of it all.

OR—I can remind myself that this BURN means that changes can happen in me.

Changes like practicing and experiencing gratitude in the midst of hardship and grief.  Changes in the form of implementing new methods to manage Ryan’s behavior.  Changes in my attitude and perspective.

I will embrace the burn in this new year and phase with Ryan/PWS, and therefore embrace the changes I desire for my soul.  That God desires for my soul, my family, and home-life.

Painful? Yes.  Easy? No way.  But like I do in Rebecca’s classes, I will close my eyes, breathe deeply, and pray through the burn.  I will remember that I CAN DO THIS.  And I won’t give up or give in.

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A Raw and Honest Love Letter

126018790Dear Sweet Mama,

You have been given an incredible, amazing, and heartbreaking gift.

You have been given a child with “special needs.”

The needs could range from severe allergies to severe handicaps and/or anything in between.  Not that there is a spectrum and your story is worse than another’s mom’s story.  Or her story is worse than your story.  You just each have a story.  And a journey that has been difficult.  It may get easier.  It may get harder.  BUT you are all “special mamas” together.  You are all in this TOGETHER.

And it’s not the road you asked to travel down.  You were hoping for the raod that leads to Italy, Fiji, or Santorini.  Yet instead your travel stop landed you in the middle of a war-torn country you’ve never been in.  There are landmines to baby step around.  There are well-meaning but insensitive people there.  And there are downright nasty, unjust humans there, too, who make your struggle to provide everything your child needs, all that more challenging.

It is TRUE, though, that in this distant land of life with disability there are angels.  There are lovely souls who care, and whose patience and compassion are as vast as the universe sky.  There are angels each step of the journey if you look for them, in the smallest cracks of your day. YES.

Sweet Special Mama, do not think for one second that your experiences in Motherhood are in any way on par with families who have not encountered disability.

Do not think for one second you should be like THAT MOM, wife or family.

Do not expect that you will cherish motherhood and parenting in the same way.

Do not expect that you will not need breaks.  Lots of them.

Do not expect to never fantasize what life would be like if your child was born perfectly healthy in every single possible way.

Do not condemn yourself for wishing, hoping, praying, and pleading for a re-do.

Do not condemn yourself for wondering if life would be easier for you, your husband, and your other children, if your child passed away.

You, Mama, carry heartache.

You carry loss.

You carry an on-again off-again grief.  And it comes in waves.  And in your everyday life, its there underneath the surface, threatening to come up.

It takes some of your joy.  It makes you tense.  It makes you more snappy and less carefree-and-happy.

You have become more tender and you have become tougher as a result of this terrific trial in caring for your disabled child.

And it’s ok.

 

You are ok.

 

You are very ok.

 

You can do hard.  You already have.

I know there are moments you absolutely want to curse and cry, “Why me?  Why us?”  You want to pull your hair out after a day of dealing with illness, or medical specialists, or anxiety or behavioral issues.  That is normal.  You are normal.

You need to vent.

You need to cry.

You need to share, with raw intensity and honesty, with other moms. Just be WITH.

You absolutely must exhale or your soul and spirit and body will implode.

That cannot happen because your precious child needs you, mama-bear-advocate-extraordinaire.  So find, seek, and chase after moments or days of respite.

In your brighter moments, you completely recognize that you are deeper, richer, more compassionate and more sensitive to the needs and crises of others because of what you have been through.  Because of what you go through every day.

Yet, it is VALID to wish that this unique opportunity for major emotional, spiritual, and intellectual growth was not given to you.  That personal growth could have come, should have come, in a different vehicle altogether.  No mother, however excellent and mature she is at having wise perspective, wishes for their child to be disabled.  No mother.

So again, do not place unrealistic expectations on yourself, your heart, your mind, and your day-to-day dealings with disability.  It is hard.  It is maddening.

And when the sweet moments and small victories come, inhale them, deep into your soul.  Because of these, you will survive.

Sweet Special-Needs Mama, you will survive, and the sun will still shine.

I love you,

Jessica

 

 

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Jen Hatmaker Is My New Imaginary Friend

I have a crush on Jen Hatmaker.

She is a new discovery to me.  Writer, blogger, speaker, mother to 5 (she wins!), including two she adopted from Africa, and wife to Brandon Hatmaker.  She lives in a city I would love to live in, Austin, Texas.

Anyway, after reading her blog post that went completely and insanely viral, “The Worst End of School Year Mom Ever,” I was hooked.

Because she’s my kind of girl.  With her unbridled and unfiltered way of writing, she engages you quickly.  She is hysterical on top of that.  She says how she thinks and feels.  REALLY thinks and feels, not what she wants you to think of her.  She’s not trying to win our approval or favor.  Yet, she is not abrasive.  Some people find sarcasm abrasive; I do not.

She’s not writing to make herself sound like The Perfect Mom, The Organized Mom, or The I Have It All Together All The Time Mom.

She’s honest.  And imperfect.  Honest about her imperfections.  So you relate to her, like her, love her, want to high-five her and buy her a drink.  (I actually tweeted that to her, but I’m so tech-challenged, it probably did not reach her.)

If you’ve followed my blog or me around long enough, you know I don’t mince words.  I’m painfully honest about life as both a mother and special needs mother, and totally full of a zillion imperfections.  I am not afraid to admit Major Mommy Failures.

Jen Hatmaker, if I had my wish, would be my next door neighbor.  And running partner.  (I don’t know if she runs.)  And prayer partner.  Oh, and of course, my writing coach.  I imagine us throwing back a glass of wine and sharing war stories and encouraging each other forward.  My stomach muscles would ache from all the laughter.  Did I already say she is hilarious?    She’s the type who would never judge me for pulling one of my kid’s hair (once!)   She would remind me to have new mercies each day for my kids and remind me how deep breaths and Twizzlers help when you are pushed to the brink in Mommy Land.  She would pray for me, in a caring humble way, not in a “Lawd, HELP HER!!” way.

My other pretend next-door neighbor would be Glennon Doyle Melton.  Because I know that if she heard me raise my voice at my kids, she would probably knock on my door, and give me a wink and a hug.  And again, not judge me, but say, “Carry on warrior mama.  You can do hard.”

Glennon, creator of Momastery.com, writer, speaker, blogger, is another new fave.  She is so gutfully honest about her own struggles, and is passionate about “making the unknown known.”  Her heart and vision is to help others unmask and take off their superhero capes they hide behind.  To help others be vulnerable and truthful about who they are.  She is so snarky and smoke-and-joke in her writing that I feel she gets me and the snarky way I sometimes feel.  Yet she is so sensitive and deeply profound, and writes provocative posts.  She was born an old soul.

One more shout out I must must give is to Rebekah Lyons, author of Freefall to Fly—A Breathtaking Journey Toward  A Life Of Meaning.  (I have actually met Rebekah in person and she is lovely, I might add.) She writes like Jen and Glennon, from her heart.  She writes her own story, authentically and transparently.  She blows open the topic of depression and anxiety women face.  She bares it all and in the meantime blesses us to our souls and we are changed for the better.

What all three women offer to us in their writing is validation, encouragement, wisdom and feeling completely understood.  They offer themselves.  And if we lived next door to them, I’m sure it would come out of their pores and smiles.

What is speaking to me these days in my life as a mother, is—IT IS HARD TO BE A MOTHER.  A GOOD ONE, that is.  It’s definitely easier to be unintentional, lazy, emotionally-reactive, and neglectful.  I don’t want to be that.  God, no.

It’s HARD to do it all, wear 17 hats, and keep the Pottery Barn plates spinning and do it gracefully without ever becoming frustrated, tired, or just unglued.  NOBODY CAN, I remind myself, but not enough.  As my friend Kristin says, “NO ONE lives the Pottery barn life, and its time we all started talking about it!”

If “they” say they do, and, with a smile on their face, then they are inauthentic. And I cannot be friends with them.

–I love being a mother and then I don’t.

–I try and I fail.

–I do good and I do bad.

–I hug and I holler.

–I cuddle and I cuss (not in front of them).

–I love-on my littles, and then I’m a total lame-ass.

–I’m emotionally present, and then I’m aloof.

–I’m all fun-goofy-and-dance-party mom, then I’m somber and

preoccupied.

–Like Katy Perry sings, I’m hot and I’m cold.

–I embrace the chaos and clutter and a minute later I curse it.

–I question whether I should have become a mother—and then I have THE BEST MOMMY MOMENT EVER, and I recoil at the thought.

–I make special dates with my kids, and then I dream about special dates for me, all alone, in a beautiful hotel by the beach.  Alone.

I’m human.

I’m embracing my humanity, my feelings, my thoughts, my strengths, my weaknesses, my sins, and my angst.  I am trying to let go of the guilt I feel all of the time about the mistakes I make 23 times a day.  This is a real challenge…the mommy guilt.

I lay it all out for you to read and peer into.

And I do sometimes wonder what my mom or mother-in-law would say if they were alive and reading my blog.  Would they applaud me or be horrified at what I spill out?

It’s cathartic for me, and by the lovely and kind responses I’ve received, it’s cathartic for you.

The angst I feel in motherhood fuels my writing.  Maybe that is why God has not healed me or released me from it, nor has He slapped me up side the head with a new perspective. (Not that He, in His goodness and mercy, would actually do that.)

So, I embrace you, Mothers of All Littles out there.  I embrace your gifts and talents and courage as a mom.  Whether you are a SAHM, or a working mom, both lifestyles are taxing and wonderful.  I embrace your failures, your fears, and your anger, that you never even knew you had, till you had children.

I do not and will not judge you.  I wont judge you if you “have it all together” or if you pretend to, or if you can never, ever, ever seem to get out the door on time.  I won’t judge you if you pull up to school in a sippy-cup-laden, messy minivan, or a pristine Prius.  We all try so very HARD to get it right.  As my friend, Kristin says, “NO ONE has a Pottery Barn life, and its time we all started talking about it!”

I just lied. 

I would be a little bummed about your pretending (or just jealous of your incredible organizational skills!).  Actually really bummed.  I understand the appropriate game face at certain times and situations.  I took Social Skills 101 and 102.  But a lifestyle of pretending, denying, and hiding does not equal joy or growth. Does not.

My new mantra is:

 HONESTY+VULNERABILITY+TRANSPARENCY= TRANSFORMATION

I want to grow.  Desperately.  And I want you to grow, too.  Into the most beautiful, loving, giving, compassionate person you can be.  As mothers, as wives, as daughters, sisters, and girlfriends.  All these parts of us are gifted and to be shared.  For the good and blessing of the world.

Even though Jen Hatmaker and Glennon Doyle Melton are just my pretend BFFs, I am thankful I DO have women in my life (you know who you are dear girlfreinds) who accept me, who inspire me, and who push me (and sometimes) drag me towards a transformed life.

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Confession

Its TRUTH-TIME.  

I will share 10 ways I have blown it as a PWS mom. (I blow it as a “regular mom” all the time, too, by the way.)

We, as parents and caregivers of a child or adult child with Prader-Willi syndrome, are all trying our best to provide what our special peeps need.  We read, we research, we go to endless appointments, we read newsletters like this, we attend behavior training sessions, we follow food schedules and life schedules and implement car rules and safe eating rules, AND WE REALLY TRY to maintain a calm environment.  We desire for our child (all our children) to succeed as best they can.  And we are working so very hard.  Hard. All the time.

Then we blow it. Or at least I do.  Here are the 10:

  • I lost my cool. I yelled at Ryan.
  • I rewarded with food (the whole family).
  • I gave in to a tantrum.
  • I triggered a tantrum with my impatience with the 583rd question of the day. (Or was that 983rd?)
  • I did not monitor calories.
  • I did not do proper priming before an activity or event or change in schedule, and therefore paid the price with a tantrum.
  • I used negative consequences (took away his beloved CD player) even though they don’t work.  (And I know they don’t work.)
  • I gave up on the token system because I was sick of having to be uber –consistent with it, month after month.
  • Used a threat to motivate him to do what I needed him to do.
  • Are we at #10 yet? You get the idea…

When I make these mistakes from time to time, hopefully not all in one day,  I beat myself up horribly and feel that darn mommy guilt.  Again.  The guilt monkey sitting on my shoulder loves to taunt and berate me to no end.  And I accept it for a little while. Then I tell myself, we all do it.  We all make mistakes.  Yes, even the ones who seem to have it all together and tell you they “never ever yell” at their kids.

We must give ourselves a little grace once in a while.  We are imperfect people living in an imperfect world with an imperfect family dynamic going on.  Why do we (or just me) need to place unrealistic expectations on ourselves to NEVER EVER make a mistake as we parent?  Do we need to beat on ourselves over and over? I think not my friends.

GRACE.  Give yourselves some today.  Forgive yourself for the mistakes you made and move on.  Know that you are, that we are, absolutely making a difference in our children’s lives despite mishaps and blunders.  OH YES, WE ARE.

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Moses Makes Great Dinners In Heaven

Some years it hits me.  Some years it does not. That post-Christmas blah. The let-down.

On December 26th.  Or even sometimes RIGHT after the Christmas morning of fun and frenzy and children’s delights are all over.

Even though I don’t believe in Santa Clause or any Christmas magic per se, I have realized my adult self still has this longing and expectation at Christmastime.  That somehow a special fulfillment will arrive on December 25th.  And then the day comes and goes and poof, it doesn’t happen.

Unmet expectations.

Longings unfulfilled.

Wishes not granted.

Hopes disappointed.

Dreams dashed into despair.

This is the reality for many, at any time of the year.

This reminds me of a time my husband, Chris, had an opportunity to share at church. The theme was surrounding suffering and desires unfulfilled. He did an eloquent job, (if I do say so myself), and its so worth passing on right now.

Here is an excerpt:

Doesn’t it seem the bigger the shattered expectation or the greater the desire that isn’t satisfied, the greater our unhappiness, pain, and suffering?  It was painful to learn that our son, Ryan, has Prader-Willi Syndrome (PWS), and it shattered our desires for a son who would naturally develop friendships, graduate from college, get married, have children, and grow up to live an independent life.

The most unique characteristic of persons with PWS is that they have an insatiable appetite–actually they never feel full.  Hunger is never satisfied.  Eventually persons with PWS become very food-seeking and develop an extreme food obsession.  Although Ryan does not sneak or steal food, one of his biggest anxieties arises around his eating schedule.  He needs constant reassurance every day that he will get his breakfast-snack-lunch-snack-dinner without fail.  Cutting off a meal or snack-time for Ryan is like cutting off his oxygen.

C.S. Lewis has an intriguing quote in Mere Christianity:

   “If I find in myself a desire which no experience in this world can satisfy, the most probable explanation is that I was made for another wold.”

In light of all our struggles with Ryan, and other rough seasons for our family, that quote is challenging to me for a few reasons.  

Why is it that we live in a world where some of our deepest desires are not satisfied?   For Ryan, it’s his hunger.  It’s something for all of us.   If God created this world, doesn’t He bear some responsibility for our struggles and unsatisfied lives?   If  God doesn’t directly cause our suffering, can’t He nonetheless heal and fix things here and now — in this world?   How can I trust that heaven will truly satisfy all longings of my heart?   I haven’t discovered the best answers to those hard questions, but in the midst of daily heartache of life with a child with special needs, Ryan has helped me learn more about who God is.  I had one of those moments recently.

I was praying one early Saturday morning (not often I confess) and Ryan walked in the room after just waking up.  He asked what I was doing and I told him that I was praying.  He came and sat on my lap.  I asked him if he wanted to pray, too.   I told him to sit quietly and see if God had anything to say.  Ryan said ok, and put his head down on my shoulder and we sat still. Together.

After a few minutes, I asked, “Did God say anything to you?”

Ryan said, “Yes.”

Surprised, I asked Ryan what He said.

Ryan responded, “God told me I’m a great boy and He likes me.”

Hmm…perhaps God is speaking to him?  “That’s great,” I said.  “Did God tell you anything else?”

Ryan paused for a moment and turned to me and answered, “Moses makes great dinners in Heaven.”

I was truly moved and simply replied “Yes, Ryan, Moses makes great dinners in Heaven.”

God didn’t just speak to Ryan at that moment; He also spoke to me.  If Ryan had asked me what God or heaven is like, that’s certainly not how I’d answer.  However, that IS the way a personal God who cares about Ryan would describe Himself and heaven. God assured Ryan that his hunger — which nothing in this world can ever satisfy — will be satisfied in Heaven.  There’s nothing more I’d want for Ryan than for him to truly believe that God loves him, and despite such exceptional challenges, to understand that God can satisfy the deepest longings of his heart.   

I may never know why we, or Ryan, have to endure such trials and challenges, but it’s a great joy to know that Heaven is a place Ryan can look forward to and long for. Where his deepest desires and longings will be fulfilled. Forever.

Although this year was NOT one of those blah years for me, I am thankful for this reminder that Heaven is real and no blah moments or blah seasons of life exist there.

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Still No Tears Over Sandyhook

I am surprised at my reaction to the Sandyhook tragedy.  Or my lack of reaction, in terms of tears and sadness and heaviness.

For anyone who knows me, I am a touchy-feely girl who cries at sappy commercials and gets choked up EASILY at others’ joys or woes.  I FEEL.  I LIKE TO FEEL.  I go to movies that are contrived and emotional because I like to FEEL things.

Last Friday I was in a meeting until almost 1:00 pm (Pacific Time), so I did not hear about the Sandyhook incident till after that.  I did not turn on the news.  I did not check the internet.

I saw people’s posts all over Facebook. But I could not read any articles.  I could not look at pictures.  I could-not-would-not look at anything too closely.

My defense mechanism was and is to put it at arm’s length.  I could not dare personalize the drama and imagine this horror happening at my little Kate’s elementary school or Ryan’s elementary school.  I could not think about darling little children being gunned down by an evil maniac.  It was and is JUST TOO MUCH  for me.  So I push it away.  I don’t even want to talk about it.

And although I recognize this is my defense mechanism, I feel embarrassed and kind of ashamed.  Especially when I have briefly read other people’s dramatic posts.

I still have no tears.

The jaded part of me says, “Bad things happen all the time.  There are horrors going on daily in millions of people’s lives.  We live in an extremely broken world.  This is yet another unbelievable story.  And there will be more.  I cannot let myself get dragged down, or dwell on it.”

Please don’t judge me.  I am not as insensitive as this sounds.  Maybe this cynicism is born out of experiencing crisis after crisis in my own family life.  Maybe it’s because I know this world is not as it should be, not as God designed it to be.  And Heaven will be.  (I don’t mean that morbidly, friends.)

The only article i did read was “I Am Adam Lanza’s Mother” by Liza Long, a freelance writer, whose piece made it into the Huffington Post.

As a mother of a son with special needs, I did personalize THAT.  Although Ryan does not have the same challenges as this young man did, I do think about the greater mental health issues of our country and the lack of adequate funding and help for all affected.  It may become epidemic someday especially if there are not proper, long-term, costly-but-made-affordable-to-most, interventions.  For all ages.  Many children and adults will Fall. Right. Through. The. Cracks.  I do not want that to be Ryan, especially if his psychiatric health takes an ugly turn.

I thought that maybe writing about this today would elicit some suppressed emotions. But it has not.  Maybe it will all be delayed.  Maybe not.

What are your thoughts and reactions??

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Just Unwrap

toyshop-pile-of-presentsA dear friend of mine says to her “special” daughter every morning as she looks into her chocolate eyes, “You are a gift.”  It’s her daily mantra.  Before the cares of the world set in, before the grind begins, before any reminders of the challenging journey she is on, before.  She has chosen to remind herself, despite the hardships of having a disabled child, that her daughter is a gift. Everyday. To her.  To her family.  To the world.

My friend’s beautiful way of facing every day of her daughter’s disability has had a profound impact on me. That I need to adopt an “attitude of gratitude” about Ryan before my day begins.  Armed with my morning coffee, I should clear my head of concerns and worries and to-do lists (so many of them!).  As my earliest riser Ryan comes down the hallway, I need to hug him, look into his watery blue eyes and say, “You are a gift to me.  You are a gift to our family.”

It sounds so sweet and syrupy and cliché sometimes.  It’s very hip and chic these days to throw around phrases of thanks and take on a no-complaining-no-whining rule.  We “say” we are grateful.  We keep gratitude journals. We say having a disabled child is a “blessing in disguise.”  We say it in our head.  It’s true in theory.  Yet when our hearts ache with the reality, and the on and off grieving we parents undergo, we quickly forget.  We can so easily get swallowed up in just how darn hard our journeys are.  And they are.

Therefore, in an effort to be proactively adopting a theme of gratitude in my head AND heart, I have compiled a list of things about Ryan that I am thankful for.  Here are some examples:

  1. Ryan is very polite and appreciative.
  2. Ryan never complains about any meal or snack I make for him.
  3. Ryan never complains about chore time.
  4. When I say its time for a bath, he says, “Can I play in there?” versus “But I am not dirty, and do I have to?”
  5. Ryan is very enthusiastic about family outings.
  6. Ryan has language and uses it.  (Yes, despite the 873 questions per day or per hour, I am thankful.)
  7. Ryan loves to go to school.
  8. Ryan never pops out of bed once tucked in. He’s asleep in 60 seconds.
  9. Ryan is fearless. (which leads to #10)
  10. Ryan loves roller-coasters, all sizes and speeds!
  11. Ryan is a go-getter at times and surprises us with great tenacity in physical tasks.
  12. Ryan is extremely thankful, for everything, even stickers from the Trader Joes clerk.
  13. Ryan hugs me and says, “I love you Mama” completely unprompted.  He says it often.

Have you ever NOT OPENED a package or present? Just left it in the closet?  By not listing, thinking about, and meditating on qualities and traits in Ryan I am thankful for, I am basically choosing to not unwrap a gift.  That would be foolish at best and detrimental at worst.  I owe it to Ryan.  I owe it to myself.  I am one of those people who, when receiving a birthday present in the mail, opens it immediately.  My husband will tease, “Can’t you wait till your actual birthday?” And I quickly and sheepishly say “No!”  I’m like a kid again on Christmas morning voraciously ripping through gifts with parents pleading me to slow down.  So how can I NOT unwrap Ryan?  He’s my sweet beautiful ocean-eyes blondie who is social, affectionate, and very complimentary.  Who, despite his many limitations and anxieties, has a true zest for life, and family, and holidays, and of course, food.  Ryan Bradley Patay is a gift, a gift I get to unwrap every single day.

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What’s In Your Hula Hoop?

This has been reposted from another place I write.  Worth re-posting.  

Whenever Ryan has a horrific tantrum, especially in public, I feel a sick wave inside. Internally and immediately, I ask myself,

“What will this look like when he’s 13? 18? 28?”

I feel panic and fear.  All the while, I’m utilizing my tantrum-reaction strategies and trying to appear calm and cool.  When the tantrum is over, Ryan moves on but yet I am reeling inside.  I’m left with the “oh-my-gosh-HOW-will-I-handle-this-when-he’s-older-bigger-louder-stronger” questions.

Why do I put myself on this futuristic rollercoaster?  Whenever that “wave” hits, I fast-forward and start projecting how HARD it will be.  I automatically assume it’s going to become intensely challenging as the years go on in Ryan’s journey with Prader-Willi syndrome.  It is certainly not going to get easier.  None of the symptoms or behaviors goes away as children age.  They don’t “grow out” of any of it.  (Darn…Too bad there isn’t a special needs fairy that grants every family one wish to remove one aspect of their child’s disability.)  My perception of my future with PWS is its scary, intense, stressful, and possibly unmanageable.  As I write this, even my adrenals are firing and my heart is racing like I just ate a handful of espresso beans!

As I was sharing, (ok, really venting and complaining), with a true-blue girlfriend about my current wave, she short-circuited me with a question.

Friend:  Jess, what is in your hula-hoop?

Me:  What?

Friend:  What can you hold in a hula-hoop?

So I then walked outside to pick up my daughter Kate’s silver sparkly hula-hoop.  I put it around my waist.  Literally.  Its 27 inches in diameter. And with me inside of it, it does not leave much room.

The message my girlfriend was trying to get into my fearful, worry-wart head was that I need to focus on today, this week, or at best, just this moment.  All I have permission to think, feel, and worry about is what I can fit into my hula-hoop.  THAT’S IT AND NO MORE.

A huge struggle in special needs parenthood-dom is to let our hopes for our children outweigh our worries and our fears.  The future will be the future.  I cannot control it or change it or make it infinitely better by freaking out now.  I am only doing my marriage, my family, and myself a giant disservice by ruminating about what life will look like when Ryan becomes a teenager or adult.

Now where’s that hula-hoop?

Picture from troubadourshow.com

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Moms’ Night Out Junkie

I’m a group-y kind of girl. I always have been.  No, not that kind.

I love the village of my girlfriends that I get to live in from time to time.  Were it not for my girlfriends or fellow mom friends, I would not be as validated, or as encouraged, as I need to be.  In fact, you probably would not want to be around me.  Because my true girlfriends challenge me to be the best me, at the same time they accept and love me as I am…a flawed mother just trying to do the darn best I can.

And I must say—I have a fantastic-keeper-of-a-husband, but husbands are not girlfriends, and they are not meant to be.  It’s just not fair to expect that from them.  They are, well, different from us. (I may get in trouble for saying that…)

Women need women. Mothers need other mothers.  The friendship of fellow women and fellow moms, the camaraderie, and the i-get-you-and-you-get-me-ness is absolutely priceless.  There is a warm, friendly feeling when we girls commune and gab, gab, gab, uninterrupted by children screaming in the background, like when on a phone-call with a friend.  We feel understood and we offer validation to one another.  Not to judge or compare or criticize.  We do that enough to ourselves don’t we?

ESPECIALLY in the special needs game that I am in.

And in the same vein, couples need couples in their corner.  Families need other families.  I say this, again, especially as parents of children with special needs. We just “get” that all families with special needs kids have gone through some excruciating journey.  Without having to say much, there’s an instant bond, as “we’re fellow survivors.”   Like being in a foreign country and running into someone from our hometown, and there’s this huge moment of comfort and identity all wrapped together.

Although each of our journeys may be a little different, or a LOT different, there is a bond of compassion and empathy.  We all understand the cycles of grief, of blow-your-mind frustrations and stresses.  And oh, the victories in achieving milestones…how they mean so much, vastly more than in our “typical” children sometimes. (And we don’t want to admit it, but we feel it inside.)

I am eternally grateful for my two special needs moms groups—one within the PWS community and one within my school district.  Neither one is formal.  There are no dues required.  No rules.  Anyone is welcome.  We don’t have to ACCOMPLISH anything.  We schedule a dinner out periodically at a very yummy restaurant (this part required) and just be.  Together.  “Moms’ Night Out.”  (This goes for my “regular girlfriend moms” and “non-mom girlfriends” as well, by the way. You know who you are and how I treasure you so so so much!)

And maybe these nights out feel so good because they are nights OFF.  A break from the intensity, the demands, the needs, the food schedules, the questions, and the nighttime growth hormone shots.

We share laughs sometimes till our drinks come out our noses…then we share tear jerking stories till you know what comes out of same noses.   Venting, sharing, encouraging each other along.  We snort and make snarky comments…about the thousands of questions our children are ALWAYS asking.    We have drinks and delicious entrees.  I learn and grow so much from the other women and their savvy in getting what their child needs, through the school or the regional center.  I am inspired anew to be more calm, calm, CALM, and patient in my hectic hamster-wheel life.

Every time I drive away from a “Moms’ Night Out,” I relish in the feeling that I am not alone.  We are not alone.

 

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Why The World Needs My New “Mom Blog”

Because I love being a mother.

Because there are days that I don’t.

Because I’m not a perfect mother, and will never pretend that I am.

Because mothering IS an ongoing marathon week after week.

Because I have Luke, Ryan, and Kate filling me up with ideas for blog posts and yet I had no blog.  Till now that is.

Because I am real, raw, and honest.

Because I’m a mom who has more to say then “clean your room,” “please get in the car now,” or any other directives I spout out daily.

Because I have  a real need to share who I am and what I think, feel, experience, and observe as a mom.

Because I am a wife, mother, daughter, girlfriend, runner, and writer. I celebrate all these parts of me and you should be celebrated too.

Because I wear a special needs mom hat for my son Ryan, who was born with Prader-Willi syndrome, a rare genetic disorder.

Because I love to be inspired and hope to inspire other moms and women.

Because I dislike doing arts and crafts and science experiments, and I’m not afraid to admit it.

Because I promise to never act like my children are perfect, or my house is perfect, or my life is perfect.

Because I feel called to write. I always have. Since I was in 2nd grade.  And God keeps putting people in my path to ask me, “Have you started a blog yet?”

Because mothers need other mothers, just like girlfriends need girlfriends.  Badly. Wonderfully. Amazingly. Happily.

Because I finally got the darn courage to do this and it will be so cathartic for my heart.

Because my prayer is that this will be good for your heart as well.

So here I go…

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